Testing and Fees

[Guest guest]

It appears that many of you have completed lab testing.

My 10 year old boy was diagnosed with CMT Type 2-X link with CNS involvement

this past July. He was given this diagnosis without the genetic testing based on

the outcome of the MRI of his brain.

Our insurance company approved genetic testing. BUT, this does not give

assurance that they will pay the diagnostic facility in full. My understanding

is the blood tests cost $6,000. via Athena Diagnostics. I was told that this is

the only company that will or can do the testing in the US?

Athena sent us a form to sign that basically says we will be

responsible for what the insurance co will not pay. I hope you can understand

that I do not want to be on the hook for a possible $5,000. balance that the

insurance co may or may not pay. If I do not pay, it could end up on our TRW.

So we have not had the blood tests done as yet. Has anyone else been through

this? Is there another way to get this testing done?

Thanks,

Rita